the clamdigger

On last Friday's back roads drive with Calvin, I stopped at the cove that opens into Maquoit bay. The skies were dark, the winds were frigid and the mercury was beginning to plunge. Nonetheless, a lone clamdigger, a large, clean-shaven man perhaps not quite young enough to be my son, was putting in his airboat. I took a few photos before he launched his craft, then asked if he were going to go out the following day despite the forecast of single digits and windchills as low as minus nineteen degrees. He flashed me a handsome grin seeming to understand my worry, and assured me that he wouldn't.

As Calvin chewed his sock in the back seat, I watched from the car as the clamdigger boarded his boat, revved it up, then glided across the icy inlet as if riding a giant hockey puck. I wondered how he would keep his hands warm while sinking them into the freezing-cold muck. I couldn't imagine he'd feel his fingers for very long, even with gloves. I wondered how long he'd been a clamdigger and if it were his only livelihood. Life is hard, I thought, while considering the clamdigger's back-breaking work in all kinds of harsh conditions, and then of Calvin's daily and lifelong struggles and miseries. I silently wished the clamdigger a big haul in return for his tremendous effort.

Later on and well past my bedtime—which is often as early as seven-thirty or eight due to frequent sleep interruptions from Calvin—I watched from the bathroom window as some friends delivered a big piece of the ice cream cake that I had gifted to another friend for her husband's birthday party. Having been guests at the small celebration, they were given the foil-wrapped hunk of cake by the host to leave on our porch so I could taste some of it later. A few minutes before they arrived, the wind and Calvin's whimpers had woken me, and so I had gotten up and covered him (he can't do that by himself), then went to pee and get a drink of water. With a clear view to our driveway from the upstairs bathroom, I had seen them pull up. Watching my friend Stephanie brave the bitter, gale-force winds while trying to avoid patches of ice on our driveway made me appreciate her and her husband's effort, especially considering it was late enough they probably would have preferred to zoom straight home from the dinner party and crawl into bed themselves.

I tiptoed again through Calvin's room into ours and slipped back into bed with Michael (the ice cream cake would no doubt stay frozen outside.) Wide awake, my mind drifted from one angst-laden hope to another: that Calvin's seizures would someday soon abate; that his new medicine would begin working better than it is—if it is; that none of us comes down with Covid; that on Tuesday, Calvin's school will really reopen after eleven long days of having him home with me, both of us going in circles; that I can start running again in earnest; that more folks will get their vaccines and boosters; that this virus doesn't mutate into worse versions; that hospitals and their staff can soon catch a break; that people can get back to work; that more Americans decide to start protecting each other instead of being so small-minded and selfish; that voting rights legislation will pass despite despicable, unthinkable, partisan obstruction.

Lying in the darkness, I wondered again when so many Americans became so indifferent to the health and well-being of others—those in their community, their friends, their neighbors, their own kin. I wondered why some people insist on thwarting proven public health measures such as wearing masks in public during a goddamn pandemic. I mean, seriously, what is there to prove? Some twisted notion of freedom to do as one pleases despite posing grave risks to others? Some hackneyed belief in the myth of rugged individualism? Dude! Exactly no one accomplishes anything on their own, which made me think of my many friends who support my emotional well-being with their small kindnesses—flowers, cards, books, homemade goodies, entire dinners, phone calls, champagne, oysters, homegrown veggies, smiles, waves, hugs, love, and all kinds of cake. I thought, too, about the mailman and the grocery store clerks and the bookstore owners and Calvin's primary care provider and neurology team and teacher and aides and bus driver and therapists. We all rely on each other for sustenance. We're in this together. We need to look out for each other.

Then, I thought again about the clamdigger, who works in brutal conditions so he can pay his bills by peddling his harvest to restaurants for their patrons. In a previous life, despite being a stranger, zany me might have asked if I could join him. I'd have learned something new, might have lightened his load a bit and perhaps even made a new friend. Who knows?

Two hours later, as I finally began to unwind, I went to sleep hoping: that the cold snap would break soon; that my gifted ice cream cake (cherry chocolate fudge brownie with a coconut twist) was a big hit; that we can soon begin to see friends indoors again; that spring will arrive early; that the clamdigger made it home safely, and that his hard work, plus the care and help of others, keep him warm and dry, fed, healthy and loved.

Maquoit Bay

oh, pennellville

it's nearly ten o'clock. barely as many degrees out. ruling the day are crystalline skies and sunshine. no hint of a breeze. even so, i bundle up: long underwear, jeans, wool sweater, scarf and hat. shearling boots, gloves, grayish puffy jacket. for the first time in a year, i pack my panasonic. i miss its reliable wide-angle capture. it catches more of the world. gives a different perspective.

calvin is at school, so i turn on my phone's ringer. then smellie and i drive to the point by way of pennellville road. not far from home, it has become one of my favorite places in the world. i park the car by the side of the road. with smellie off leash, she and i walk briskly in the cold. fists balled up in my pockets. squinching my toes back and forth to better make the blood flow.

unlike life, the terrain isn't difficult—no traffic. no obstacles. gentle slopes. roads are paved wide and flat and smooth. besides smellie, i'm all alone. the feeling is sensual and splendid, like when i used to travel solo far from home. a slim gravel margin runs between trench and road. i pause to study a frozen stream running from a culvert. treading tentatively to see if the ice is firm, i punch clear through. having grasped a nearby fencepost, i narrowly escape stepping into the frosty pool below. chuckling, i feel a bit like my former kid self. oh, to be so free again! oh, pennellville, to call you my own!

out here in the peace and quiet, sound travels as if on the backs of birds. out here, i can see bits of ocean kissing the horizon between stands of trees on a hill. out here, the sky is big and magnificent, like the west i ache for, love, and still think of as home. out here, it's like there's no care in the world. pennellville, you are my home away from home.

as i walk and frame and shoot, i think about the past two years—the damn pandemic; the fourteen months my son stayed home; the scores of seizures he has endured; the conversations about elections, insurrections, masks, vaccinations, conspiracy theories, religion and its pitfalls, the true meaning of virtue. i wax nostalgic about the drives we took. the friends i've made—and hope to make—along the way; the ones i've kept and the ones who long ago somehow became estranged. pennellville, i want to whisper you every name.

in all, the dog and i go four miles. nothing to write home about. still, it's the furthest i've roamed since taking calvin out of school for three weeks after some brushes with covid. luckily, he didn't get infected. my ankles and feet are slightly sore. i'm not used to these boots; still, i could return again tomorrow. could see something new from one day to another—icy bubbles; frozen grassy waterfalls; red berry boughs; stately, naked oaks; bald eagles; snowy owls; dog walkers in hiking boots and puffers; runners of all ilks clad in myriad colors, each with their own distinct gait. 

oh, pennellville, thank you for giving me the space and freedom i can't easily get in other ways, during my virtual and prolonged lockdown with calvin. thank you for your steadfast offering of sanctuary and repose. for your quiet attention and embrace. for your lack of judgement. for your unwavering charm and beauty, no matter the season or weather. for allowing me to look upon you unabashedly and ponder anything. to see myself reflected in your skies and trees, pools and meadows. for the room you so freely give me to see and dream and feel anew.

on pandemics, mindfulness and mother nature

too many close covid contacts compelled me to yank calvin from school. wanna get him his booster soon as possible. his immunity has dwindled over so many moons. don't want him to catch omicron or delta—or other worse versions that might yet emerge. he already has too many woes. want to avoid the hospital at all costs, too. don't want to risk infecting others. wish that were the way everyone rolled.

today is the winter solstice. i can feel it in my bones—the calm. the chill. still, these are some long-ass short days taking care of calvin alone. not much to do when it's so damn dark and cold. and now the ground is covered in snow. means we're mostly stuck indoors. means i have to practice mindfulness. focus on little things—the curve of a glass or face, the color of the sky, the smell of baking bread, the sound of creaky wood floors—and on gratitude. have to tread water a little bit longer. hold onto hope. stay upbeat. thankfully, i'm pretty good at that, though calvin's recent spate of day-long mania makes it difficult. at least at night he's sleeping.

for fourteen months i did it. at the start of this damn pandemic. same old same old—hung out with calvin at home. he can't do remote school. can't use a screen. can't watch videos. can't read books. can't play with toys. can't sit still. i feed him and dress him and bathe him and potty train him. wipe him up, too. regrettably, you've heard it all before. no teachers or aides or nurses to take up the slack. only michael and his fabulous companionship and cooking. thank goodness. something i try to forget: even when there's no pandemic, our lives are hardly different.

i turn to things that help pass the time: long car rides on back roads, baths. about all i can think of. while driving, i listen to music. note the changing light and weather and landscape. see the nuance. compare it all to last year, my memory of it. see passersby braving the cold. they sometimes smile at me and wave, make my day in doing so. i try to find delight in getting all bundled up. laugh at myself sloshing around in my oversized boots (men's treads are better.) would rather romp in sneakers, jeans and t-shirt. even in winter—perhaps especially—runs and walks in the morning and evening with smellie do me good. out where the sky is big and the sun is coming up or setting. casting long shadows. painting clouds sublime colors. out where i feel my smallness most. like the first star appearing at twilight, only tinier. and yet part of something far larger and unknown. long-ass days are good for pondering this sort of thing. it's fine there are no answers, though i'm not really looking. wonder keeps me curious and humble.

a friend shared this poem with me when she saw my photo below. and though i'm no believer in the god of organized religions, i can get behind and into mother nature. so i think of "her"—the universe and all its forces—when reading it, praising only nature. and in the spirit of mindfulness and beauty, i'll pass this morsel on to you:

Pied Beauty 

Glory be to God for dappled things— 

For skies of couple-colour as a brinded cow; 

For rose-moles all in stipple upon trout that swim; 

Fresh-firecoal chestnut-falls; finches’ wings; 

Landscape plotted and pieced—fold, fallow, and plough; 

And áll trádes, their gear and tackle and trim. 

All things counter, original, spare, strange; 

Whatever is fickle, freckled (who knows how?) 

With swift, slow; sweet, sour; adazzle, dim; 

He fathers-forth whose beauty is past change: 

Praise him.

—Gerard Manley Hopkins

back at home and on the road

Last week at school, Calvin came in close contact to three individuals infected with Covid-19. A close contact is considered direct physical contact or a total of fifteen minutes in any 24-hour period within six feet of someone who has tested positive for Covid-19. The day after Calvin tested negative following his first close contact, which was the Monday before last, we learned of the two additional exposures last Thursday and Friday.

Today, I made the decision to keep Calvin home from school until after the holiday break. The decision was not an easy one; Calvin will miss out on riding the bus and spending time with his teacher, aides, therapists and classmates. Instead, he will be mostly cooped up at home playing with his baby toys, spinning in his swing, taking baths and car rides, and walking aimlessly around the house and yard with me, as long as there's no snow on the ground. No doubt it will be an inconvenience for me, too, in that I'll have far less time to myself for things like writing and taking showers, and I'll have to deal with Calvin—his needs and behaviors—around the clock again, after having done so for more than a year at the start of this damn pandemic. Thankfully, Michael helps out when he can, and does all of the cooking, which is amazingly tasty. And, I feel fortunate to be in the position to take that decision, in that I no longer have a job or career to worry about.

The decision was mainly taken to prevent the risk of any additional close contacts at school. Keeping Calvin free from additional close contacts will allow him to get his booster shot sooner than later, since boosters can't be given until two weeks after a close contact. What with Covid cases surging, and in light of the recent emergence of the more contagious Omicron variant, I want Calvin to have maximum immunity around the time he goes back to school on January third. A booster before Christmas will do that.

So, for the next two-and-a-half weeks, life for us is going to look pretty much like it did last winter: back at home and on the road for long car rides, taking in the scenery, waving at friends and strangers, and listening to music. We survived more than an entire year that way, so I'm sure we can manage to do it again without too much trouble.

In other news, we have slowly increased Calvin's new antiepileptic drug, Xcopri, from 6.25 mgs to 18.75 mgs per day (I'm splitting pills into halves and quarters) without seeing any noticeable side effects. Most adults take doses between 100 to 400 mgs a day. My goal is to increase Calvin's dose only when he has a breakthrough seizure. The titration schedule suggests increasing the dose every two weeks regardless. That makes no sense to me. In my mind, less is always better if it can work. My hope is that he doesn't have to take more than 25 to 50 mgs when all is said and done. I want to avoid taking him to extreme doses in an all-out effort to achieve seizure freedom. I want him to have a decent quality of life above all else, which might mean trading a few seizures to avoid heinous side effects, if you know what I mean.

So far, Calvin has gone eleven days without any seizures, and has had only one seizure—a grand mal—in the month of December. Knock on wood. Cross your fingers. See you on the roads.

glorious morning

it's a glorious morning when calvin wakes up on his seventh day without seizures, eats all of his breakfast, then gets on the bus heading to school. it's a glorious morning when a field sparkling with frost crunches underfoot, when trees have turned neon and the sky is blue. it's a glorious morning when it's thirty degrees and the sun is warming my face and shoulders. it's a glorious morning when i see people i like and love on the roads and fields and trails.

this morning, smellie and i went on a stroll with lauren and her dog, hola. we caught up on all things newsworthy and personal. we took a detour to an open space i rarely go. there, the marathon runner i used to see quite often on my pandemic car rides glided by and said hello. later, on the second part of an extra-long walk, i ran into a smiling tahnthawan, gave her a hug and talked with her about dogs, sparkly things, and trying something new. back at home, i marveled at the morning light splashing on the acidy, autumn foliage in my garden. any one of my few encounters were enough to make my day a good one.

after a late-morning bowl of steel-cut oatmeal with spoonfuls of honey and flaxseed meal, i drove along the back roads to michelle's house. she gave me a tour of her gardens, which are magnificent and ruggedly lovely, even as the perennials have gone to seed. then, we set out for a little jaunt, at first walking along the sleepy street that runs in front of her home. from there, we dipped into a quiet neighborhood and, at the dead end, ducked into the woods. the path, which was blanketed with fallen leaves, spilled onto a salt marsh offering a wide-open view of maquoit bay. we were surrounded by maine's astonishing beauty. warmed by the sun and standing on mats of soggy reeds and wooden planks stuck in the mud, we talked about caring for our disabled and chronically ill kids. as a hospital nurse, she shared some of her nightmarish emergency room covid stories, and we agreed that now is not the time to give up on measures meant to combat the pandemic, save lives, and suppress the emergence of more virulent strains, by getting vaccinated and wearing masks indoors. we also agreed that places like the one we were immersed in have saved us during the pandemic—that if we didn't have easy access to roam in and around wild, beautiful landscapes, our lives as caretakers during the pandemic would be much harder. i told her that the pandemic—most notably because of my daily drives along back roads with calvin when he wasn't in school—had made me more grateful for maine, its space, beauty, and its people. in essence, familiarity has endeared me to it.

i drove home with the windows rolled down. a sunny, sixty degrees feels balmy in a maine november. the breeze blowing through my hair felt exhilarating, like riding my bike as a girl. heading down the hill toward the bay, i could see forever—a rare thing in this place of few soaring vistas. i felt a sense of freedom i don't often feel anymore. i still had two hours to kill before calvin's return from school. i had time for a long, hot shower, and a chance to do some writing. having worked up an appetite, i dreamed about all the delicious leftovers we might eat for dinner—black beans and salmon, chicken curry, turkey-ricotta meatballs in puttanesca over homemade noodles—and the chocolate-malt-marshmallow-oreo ice cream cake i just made but have yet to taste. i was filled with gratitude. and i wondered, after such a glorious morning, if anything else (besides my amazing husband) might just jump right out and delight me. right then, calvin's bus pulled up to the curb, and my drooly, smiling turkey stepped off and almost hugged me.

staying safe

Calvin's final day of summer school was a sweltering one. When he got off of the bus, his mask was soaked with drool. Wiping his face as best I could with the corner of his bandana, I felt sorry for him; it must be near impossible to breathe through a saliva-soaked surgical mask, especially when it's ninety degrees.

As the world grapples with a runaway pandemic, our nation is approaching 640,000 deaths from Covid-19. To make matters worse, the more dangerous and contagious Delta variant is fueling a resurgence that is ravaging mostly unvaccinated communities, their healthcare facilities and workers. Regrettably, this predicament was unnecessary; some leaders haven't been aggressive enough implementing clear measures and messaging that could truly cut the virus off at the knees. Too many people still refuse to be vaccinated and/or wear masks, many of them led by mis- and disinformation they've gotten from certain politicians and rabbit-hole posts spread on social media. Tens—if not hundreds—of thousands of hospitalizations and deaths could have been prevented if certain so-called leaders hadn't downplayed and politicized the pandemic and things like wearing masks, and had we all been more deliberate and steadfast in protecting ourselves and our neighbors. It seems we're always playing catch-up with what is an ever-evolving and aggressive virus. Collectively, we haven't done what it takes to get ahead of it. We have been and continue to be reactive instead of proactive. This hot mess is of our own doing, though some folks get more credit than others for turning it into such a shitshow.

Despite these grave developments, there are those who remain staunchly skeptical about the need to get a Covid vaccine and/or wear a mask. Some are convinced that they are largely immune because of their youth, healthy diets and/or lifestyles, forgetting that in recent years they've been sick with the flu. Others aren't following the science about vaccines' overwhelming safety. Still others believe in wild and dangerous conspiracy theories, most of which can be easily debunked. Infectious disease experts explain that variants are more likely to emerge from the unvaccinated since the virus has more time to replicate and mutate in a body that doesn't have a vaccine in place to impede its progress. Also, unvaccinated people shed the virus longer than vaccinated ones whether symptomatic or not. Moreover, the Delta variant's viral load is 1000 times that of the Alpha strain. Unvaccinated people make it all the more possible for the emergence of an even more contagious, virulent and deadly variant which might prove resistant to vaccines. Then what?

My thoughts wander again to Calvin—my infant-toddler-teen whose seizures seem tugged into action by full moons, new moons, dips in barometric pressure, high humidity, and illness. Though all three of us are vaccinated, I worry about what might happen to us if we were to be infected by the Delta variant (the vaccines are highly effective in preventing severe illness, hospitalization and death, but we can still get infected.) I know what Covid can do to hearts, lungs, and brains, but the full, long-term implications of Covid are still unclear. I worry about Calvin; I have little doubt that some of his classmates this fall will attend school unvaccinated, not because they aren't old enough, but because of their parents' dubious stances on vaccines.

Please, for your neighbor's sake, mask up and get vaccinated.

the kindness of strangers

It's Thursday at two a.m. I'm in bed with Calvin after his seizure. With my hand draped across his side to monitor his breathing, I reminisce about my previous day. I think about the kindness of strangers: the salty, sunburned guy in sleeveless sweatshirt and torn jeans who wanted to help me when Calvin dropped down in the middle of the grocery store; the woman in the checkout line who let me and my impatient, pre-seizure Calvin cut in front of her; the kind clerk who was uber-patient as I fumbled with my wallet and stumbling child.

In the darkness of the room, my thoughts then drift to the strangers I've met while driving around on the back roads with Calvin. Countless folks brightened my brutally-long and sometimes dark pandemic days, but none as much as the runner, the Carhart dog walker, and the black-clad couple, all of whom I used to encounter with some frequency. Since our car-ride schedule has changed, however, and since Calvin is having so many seizures which require a day or two of recovery, I rarely see these familiar faces anymore. I miss them, miss our exchange of nods and smiles and waves. Because my days are still long and my child is still sometimes near impossible, their absence is palpable. Recently, I finally pulled over, introduced myself and connected with the latter three for more than a fleeting moment in passing. I expressed my gratitude for their unwitting source of comfort amid a difficult time. The first of these roadside stops was with the black-clad couple. It yielded a kind invitation from the woman, Lynn, for me and Calvin to visit her and her husband, John, at their home on the Point. Yesterday, while Calvin was in school, I took her up on her offer, deciding to go solo to suss things out for a possible future trip with Calvin. As we got acquainted in their kitchen, John frothed up some milk for my coffee and made us breakfast. With plates of cinnamon French toast and berries propped in our laps, we sat on their deck overlooking a misty inlet. We spoke of a dear mutual friend, of the other back-roads travelers, of art and family and pharmaceuticals and politics and pandemic. Lynn then gave me a tour of their home and gardens, which she and her husband have worked on improving for decades. I found the two of them to be intelligent and artistic, with good senses of humor, and they revealed an easygoing openness and humility. The short time I spent with them in their idyllic setting felt like being on vacation. Upon my leaving, Lynn and I gave each other goodbye hugs, and made a mental plan to get together on my turf; it felt as if I'd known her for years.

Finally, dawn begins seeping in through the windows, and as it does, my day at the grocer and with John and Lynn seems like a distant memory. As the shadows recede, so too does the risk of Calvin's demise from SUDEP (Sudden Unexpected Death in Epilepsy), so I finally sneak out of his bed and into mine. As a cool breeze drifts over my body from the open windows, I close my eyes and continue to dream and wonder about the lives of strangers, and of the pleasure of making friends with them. 

on the road again

After several days stuck indoors, we got on the road again. It was a good day. Calvin woke up happy, ate well, smiled plenty, laid in my lap calmly in the heat and humidity. On our ride, I saw the Carhart Man with two of his dogs. I pulled over and introduced myself. Told him about Calvin and our year-plus of back roads travels. In asking about his third dog, he told me he had recently buried it. At seventeen, it had finally given up the ghost. I expressed my condolences, then added my gratitude for his unwitting help in getting me through the damn pandemic with his grins and nods. He smiled broadly when he said it made his day knowing he had eased my way. People are good. So many are understanding and compassionate. Despite my troubles, I feel so fortunate.

As we continued on, Calvin remained content, having mostly recovered from three recent grand mals in two days' time. We drove along at a pace best for taking in the scenery. In a nearby field I saw little kids kicking soccer balls. From afar, I think I spotted the red-headed neighbor boy—not much older than Calvin—whom I've watched grow from a sweet little kid into a fine young man. My eyes stung and I tasted salt at the back of my throat seeing him shepherd the other children around. So many missed opportunities, I thought to myself, wiping one eye with the ball of my thumb.

Driving on, I noted the billowy, peachy-pink willows which are still in bloom, though fading soon. Discovered early hydrangeas blossoming like balls of popcorn in creams and blues. Saw massive stands of bright-orange day lilies flanking the road. Watched thick summer canopies of maple and oak wrestling with the wind.

I took the straightaways and curves slowly. I made an impromptu visit to a friend's house. She wasn't home, so I left her a happy face made of two sun-bleached oyster shells, a rock, and a banana-shaped leaf for a mouth. I stopped and watched a bay tossed into whitecaps by the gales. I saw a blue heron and one brave wader shoulder-deep in the sound. It was so good to get around. Good to get back on the road again. To get out of the house for a spell.

breakthroughs on a somber day

again, my mood is somber, reflected in the sky's leaden heaviness. weighty as a handful of stones in my pocket. but like a cloudy sky, there are breakthrough moments of light. little bits of levity, like when i pick up a sleek and clean smellie from the groomer and she goes cutely berserk. or when my husband comes home early. or when i see the space open up as i chop down a sickly, old, monster rhododendron, and michael finishes it off with woody's chainsaw—so much possibility for something beautiful to take its place. something less beastly and oppressive. something i don't have to wrestle. something that doesn't burden me like my son's ongoing struggles.

lately, sorrow has been setting in as i'm reminded of how calvin, who is seventeen, should be a rising senior in high school—should be looking into colleges, reading interesting and complex novels, mowing lawns, hanging out with friends on the town mall or bowdoin quad, leaping off of piers and low bridges into brackish waters. instead, he's chewing on a crocheted rabbit rattle, having his hand held while walking down the sidewalk, tossing his sippy cup sideways like a toddler, playing with baby toys, being potty trained, wetting diapers.

several of my friends and acquaintances have kids his age. they're so grown up. independent in nearly every way. they've got futures as bright as breakthroughs of sunshine and blue sky in a bank of dark clouds—hopeful, sparkling, limitless. witnessing them is lovely, yet, like bittersweet lozenges, hard for me to swallow.

and as the pandemic has slackened a bit of its grip, i feel surprisingly unmoored. as the tethers are loosened, i'm not sure what to do. i find myself flailing. it's a strange mix of emotions. free and yet still imprisoned by my son and his condition. and while my husband made plans to visit italy this fall to print his next book (having photographed in paris and hawaii several times in recent years) i find myself wondering how i'll get through today, tomorrow, and the day after that. wonder where i'll be or have traveled, or what this normally-prolific self will have accomplished in two, five, ten years. nowhere? nothing? same old same old?

and i'm missing the handful of folks who unwittingly helped ground me during the pandemic. familiar strangers—the runner(s), bikers, strollers, dog walker(s)—smiling, nodding and waving to me from the roads. faces i look forward to seeing. lives i can only imagine and live vicariously through. haven't seen them lately. like a starless sky, without them i'm having trouble navigating through the pandemic's rough and receding seas. other than my husband and son, and the landscape itself, they've been my constants this past year, like little beacons or shards of light in a darkened sky. saw them much more than my own friends, though from afar. without their grounding, i feel as though i'm drifting from shore. and though i'm a pro at treading water, i feel slighly seasick. but perhaps, like stars on a cloudy night, they're not reliable. and why should they be? i'm nobody to these strangers. we all have our own lives and loved ones and struggles. and yet i remain eternally hopeful for communion, compassion, friendship, empathy, understanding.

today, however, on a favorite stretch of wooded road, i saw the black-clad couple (though this day wearing more earthen tones) who live on the point. i slowed and pulled over. rolled down my window and introduced myself. while trying hard not to choke up, i told them how i'd seen them frequently while driving the same roads nearly every day during the pandemic with my nonverbal, legally blind, autistic, epileptic, seventeen-year-old boy. they peaked in on calvin, who was in the back seat craning hard to find an absent sun. i told them how reassuring it was to see the familiar faces of strangers like them during months on end of long, lonely days spent solo with my son. they said they recognized my car. i'd seen them wave. the three of us visited for quite awhile, discussing neighbors and kids, drugs and doctors, the pandemic and back roads. i invited them to read my blog. it felt good to finally meet and connect with folks who have unwittingly been my mooring during a very difficult year. felt healing to offer them my gratitude in person. i wish i could have hugged them. they seemed quite affable and open.

finally, we said our so longs, and as i put the car in gear and headed to the point, i felt the sun's warmth and saw its rays start breaking through cracks in a vast bank of clouds reflected in a tranquil sea.

weather report

Written yesterday, in the hours before Calvin suffered a grand mal:

Thanks to his Covid vaccinations, Monday was Calvin's first day back in school after more than a year. It was a good day for both of us. Calvin kept his mask on well enough to roam the high school's hallways with his aides. I spent the morning working in the sunny garden accomplishing most of what I had set out to do—which was a lot—on my first half day without my kid in tow. When Calvin got home at noon, we strolled around a bit before he led me to the car and patted its door, seemingly indicating that he wanted to go for a ride.

We visited our usual haunts—Pennellville, Simpson's Point, Rossmore, Wolfe's Neck, Mere Point, Bunganuc, Macquoit. Along the way, I stopped several times by the side of the road. I spotted a red fox, the sun in her eyes, squinting at us from a grassy slope. We greeted a couple of muddy clam diggers just after their back-breaking harvest. I chatted with two wildly friendly, hip, young, pierced, tattooed lawn care workers, and found myself wishing I could call them friends. I watched a woman unload perennials from the back of her car. We got caught in a fleeting squall.

This time of year is especially beautiful in Maine. The temperatures are mild and the air is dry. The trees haven't reached full foliage, so their branching is still apparent, unlike in summer when masses of green leaves limit one's sightline. The delicate yellows, greens, reds and ocher buds of spring trees are a softer, subtler version of autumn and are, in my opinion, more gorgeous, especially when sunlight illuminates their canopies after a rain.

Today, Calvin had an okay day at school, but something's bothering him. He's a bit unhinged, plagued by manic outbursts and eerie silent spells. A perfect storm is brewing what with the new moon's gravity, the low barometric pressure, and the fact that nine days have passed since his last seizure, which is a bit longer than of late. In other words, he's due. Hopefully, though, last week's increase in his bedtime dose of CBD oil will allow for longer stints between fits. In the past thirty days he has had "only" four grand mals, which is better than the six-plus grand mals which have been occurring in any given recent month, so maybe it is helping. Hope springs eternal.

Despite Calvin's outbursts, our drive was mostly relaxing and allowed me time to reflect and come to some realizations: having Calvin back in school isn't nearly as angst-provoking as I feared; car rides are nice any time of day, despite that I already miss seeing a few of my favorite, familiar, back-roads regulars; though sometimes windy and cool, late spring is an amazing time to be in Maine; getting vaccinated is an uber-liberating chance at life back in the real world; the CBD oil appears at a glance to be helping to quell some of Calvin's seizures. After nearly twenty years, Maine is growing on me by degrees.

back to school

After spending all day every day of the past fourteen months taking care of my disabled son Calvin, he will be returning to school on Monday, barring any unforeseen circumstances or seizures.

I can't say how well my boy will make the abrupt transition from the literal and figurative softness that is our home—cozy rooms, rugs and sofas, beds and pillows, warm, loving bodies to lap-nap with and hug—to the the high school's hard-edged spaces and commotion, blaring announcements, rigid chairs and desks, industrial floors, and lots of people whom he hasn't met or spent time with in months.

As for me? Hahahaha! I'm feeling a bit anxious, like a mom sending her kid to preschool or kindergarten for the first time. I worry about his comfort and happiness, particularly since Calvin can't verbalize his troubles or wants, and I'm despairing at the thought he won't get hugs. Though in many ways Calvin is a tween-sized infant-toddler, chronologically he's seventeen, and last year the administration maintained that embracing him might look suspicious in a sexual way. On the one hand, I understand the logic in this age of predators. On the other, it's most regrettable that we live in a world where one of Calvin's most basic human needs is denied because of fear of litigation over appearances. I also fret about Calvin's ability to move freely between the school's classrooms, hallways and stairs, which his akathisia (drug-induced restlessness) demands his body do. But, until he is compliant at wearing a mask—though it's yet unclear what exactly that means or how it will be measured—moving through those spaces when others are present will likely be prohibited, despite the fact he's fully vaccinated. With that in mind, I've had Calvin practice wearing a mask, and I'm amazed and proud of how well he tolerates the bothersome cloth which, like so many things, he doesn't understand.

I trust Calvin's teacher and ed-techs to do their best to keep him happy and allow him to be active or restful, depending upon his needs. I hope they don't push him too hard; I imagine his stamina has waned while being indoors through the icy Maine winter and frigid spring. I also hope they don't leave him sitting at a desk staring at a toy he doesn't care about. I hope they speak to him, engage with him, read him books and sing him songs. I really am fretting his return.

I've heard it said that absence makes the heart grow fonder, but I'm not convinced. Though caring for Calvin full-time has been a major test to my patience and morale, the past fourteen months has brought me closer to my son. For the most part, I've enjoyed hanging out with him. It has also been rewarding to see his progress: pooping and peeing on the toilet (mostly); improved balance; better responsiveness to our verbal cues; a tiny bit of headway eating thick yogurt with a non-adaptive spoon; getting in and out of his bed with less help; taking bites from sandwiches and bananas (which we hold), his sheer growth—he's five feet tall (though only eighty-five pounds.)

And while I'll be happy to be freed up to do mostly as I please between 7:30 a.m. and noonish on weekdays, with the exception of Wednesdays, I'll miss my kid. I'll miss our frequent cuddles on the faded green couch, miss tickling him, giving him lots of hugs and kisses, strolling with him around the yard. I'll miss our relaxing morning drives, holding his hand and feeding him finger foods from the driver's seat, and watching him in the backseat sometimes moving as if he's dancing to the music. I'll miss taking in my favorite magnificent vistas, and seeing the smiling, waving, now-familiar faces of people who have unwittingly brightened my days through this long and lonely pandemic. And though I relish the thought of having the house to myself for a few hours, plus time in the garden alone, I already feel sad at the thought of losing our pandemic routine. Thankfully, though, there are still weekends, Wednesdays and dreams.

little bits of good news

calvin received his second pfizer vaccine with michael, and will achieve peak immunity by tomorrow. i'll be good to go by saturday. calvin and michael had minimal side effects after their second shots. besides a sore arm, i had none whatsoever.

calvin's former ed-tech and bff, mary—who is also fully vaccinated and is the first person to step beyond the entry to our kitchen in over a year—took care of him monday for a few hours so i could finally get into the garden to rake and prune and weed and feed emerging peonies. calvin and i were extremely happy to see her and give her hugs.

as i had hoped, since restarting 20-milligram evening doses of harmony cbd cannabis oil three weeks ago, all three of calvin's seizures have been one-offs (one every seven days); prior to that, his grand mals were, for months, coming in clusters of two or more in as many days, and often within hours of each other.

calvin is calmer, steadier, and has been sleeping better since re-adding the cbd to his regimen.

his focal seizures have all but disappeared, and he hasn't had any pain/panic episodes—which are likely caused by latent benzodiazepine withdrawal—since early december; with time they're getting fewer and farther between.

the kid has been doing pretty well at practicing wearing a mask. our goal is for him to be compliant enough to ride the bus to school and without having to be confined to a classroom by himself (with an aide.)

Calvin hugging his buddy, Mary.

embraces

just before three a.m. on sunday. embracing my son in the wake of his grand mal. his skin is warm and soft. his breathing is shallow. his limbs, lanky and long. in the dark, i reflect on our saturday, just before drifting off:

smelling sweet magnolia blossoms on my morning walk. making our first trip to the garden store since the pandemic's start. resisting calvin's desire to drop. proud of his half-successful efforts at keeping a mask on. taking a short backroads drive with a kid who is "off." exchanging smiles with the runner and the carhart man with his dogs. the sickly one is missing. i wonder if something is wrong. 

relishing strolls in the sunny backyard. paper-white, pink and purplish rhododendrons opening up. lamenting calvin's poor balance and grousing. delighting in a surprise visit from friends driving by. giving thanks for in-town living. the sun and warm breeze kissing my skin. calvin crosslegged in the grass trying to eat sticks.

sitting maskless in the garden with barbara and jens. little gabriel playing with barbecue tongs. sipping the chilled bubbly jens delivered last sunday. nibbling crispy sea salt and chocolate chip cookies just out of the oven. raising a glass to toast our covid vaccinations. barbara smiling in her pretty spring dress. her hair twisted up at the back of her head. the four of us chatting and laughing. feeding my boy blueberries one by one. blocking his efforts to stare at the sun. in-between bites, receiving his needy embraces. jens noting calvin's grieving and discontent. explaining to them that he's due for a fit.

gabriel cozying right up to michael. like petals, his dollface is slightly blushed. feeling his tiny hand in my palm. leading me to the compost pile. inspecting its rotting items with wonder and surprise. wishing i had such a child. grateful to call this cute, curious being my friend. missing his big brother nate. he's away for the weekend. such adorable people i can hardly stand it.

approaching five o'clock. time to say so long. deciding to hug barbara a week before my peak resistance (she got her first shot and recently tested negative.) amazed feeling her embrace. i linger in her arms not wanting to let go. my eyes begin to well and sting. after a bit, jens takes her place. we hug like some siblings. he kisses my head. i cry like a baby, as if we've never embraced. my yearlong hunger for this kind of connection finally, though not wholly, sated. basking in the healing power of dear friends' lovely embraces.

some kind of justice

As the mother and champion of an uncommon child—a boy who is nonverbal, legally blind, incontinent and suffers from a serious brain anomaly, cerebral palsy, developmental delay, autism and chronic epilepsy—I can describe instances of being neglected, unheard, misunderstood, dismissed, marginalized, patronized, and maligned by public servants, medical experts and society at large. I know the anguish of having a child who is sometimes treated as insignificant, undeserving, fringe, and in ways scorned and feared. I know what it feels like when others, whose care he is under—doctors, teachers, aides, nurses—don't hold themselves accountable when he gets hurt. I get angry, frustrated and indignant at what I see as injustice. Yet despite the struggles, heartaches and miseries of being Calvin's mother, I've never felt unsafe, vulnerable, discounted or mistrusted merely because of the color of my skin.

On Tuesday, I held my breath awaiting the verdict in the trial of George Floyd's modern-day lynching. Finally, I heard the words describing the homicidal defendant: Guilty. Guilty. Guilty. I exhaled and wept. I thought to myself, finally, some kind of justice, for another unconscionable offense amid generations of neglect, condemnation, oppression, abuse and murder of African Americans. 

Yet, Tuesday's guilty verdict doesn't mean the end of injustice, in the same way electing a Black president is not evidence that we are in a post-racial America.

Equity remains elusive for millions of Americans in this nation of so-called liberty and justice for all. Injustice and barbarism are the foundation of this nation's mostly-white wealth built from the ills of white supremacy, on stolen indigenous land, by generations of the enslavement, exploitation, abuse, terrorization, torture and murder of Black men, women and children. Today's mass incarceration of African Americans is a relic of slavery and Jim Crow, a way to continue profiting off of their bodies, to subjugate, disenfranchise, disempower. White supremacy and racism in this country are not superficial; like some tumors, they're pervasive and malignant, must be strangled or cut out.

Consider that many Black Americans are still fighting for: the right to vote; the right to live in decent neighborhoods and homes; lead-free water; proper healthcare; decent educations; affordable apartments; fair loans; decent jobs, raises, living wages; executive desks and seats in the boardroom; the right to move about freely; to safely drive, walk, jog, birdwatch, nap, barbecue and breathe; the right to take a knee in peaceful protest against their abuse and murder at the hands of vigilantes and the police. All because of the sound of their names and/or the color of their skin.

So, too, Black Americans are still fighting against being racially profiled and therefore unjustly suspected, stopped and frisked, pulled over and assailed, followed, stalked, interrogated, bullied, roughed up, falsely accused, arrested, jailed, unjustly sentenced, choked or shot before they even have a chance to state their case.

Today, we can breathe a sigh of relief for some kind of justice done in a Minneapolis courtroom last Tuesday, but the nation at large—with its toxic white supremacy infiltrating our military, police forces, conservative media, and halls of Congress, and its harmful racist policies and practices from healthcare and housing to law enforcement—is far from fulfilling its promise of liberty and justice for all.

Celebrating the guilty verdict in the trial of former Minneapolis police officer Derek Chauvin,in George Floyd Square on Tuesday.Credit...Victor J. Blue for The New York Times

surreal

Last Saturday morning, after having well hydrated myself, I received Pfizer vaccination number two. Other than developing a sore arm with a small bruise, I've felt fabulous. No other side effects whatsoever. As with so many things, I feel grateful and fortunate.

On my late-Sunday walk with Smellie, I went to visit my friend, Lauren, who lives on a busy corner just down the street. She and I stood in the filtered sunlight inspecting her emerging perennial garden. Although sturdy blades of green are pushing up, nothing is in bloom. Still, its potential to be gorgeous as ever is apparent. She then wanted to show me a tiny shade flower called pulmanaria. I followed Lauren through her small cottage with its screened-in porch, then down some steps into her sunken backyard. Walking through the cottage to the shady enclosure felt surreal; it was the first time in over a year I had stepped foot into someone else's private space. I was taken by surprise, my senses vibrating in a way that made me feel light and alive, and very aware of what I have been missing.

An hour later, I was back home preparing Calvin's evening seizure medications while watching him rest on the rug in the next room. Michael was busy making some delicious chicken soup. As usual, we were listening to music at a decent volume. When I closed the refrigerator door I saw a tall, handsome, neatly-bearded man standing in our mudroom. It was our dear buddy, Jens, wielding a gift bottle of champagne—something that is becoming a habit for him. At that very moment, we were meant to be gathering with him, Barbara and their two kids at a safe distance in our driveway. We were supposed to be celebrating our recent vaccinations, but Calvin's morning seizure and sluggish recovery had caused us to postpone. Jens hand-delivered the champagne anyway.

From the kitchen threshold, Jens stood and chatted with us for a bit—maskless; it had been a few weeks since he had received his J & J vaccine. I told him that I'd hug him after I reached maximum immunity on May first, warning him that he might want to wear body armor for the event. It felt surreal to have a friend in our house for the first time in over a year. It was a welcome sign of things to come.

Just as Jens left, the afterglow of the day's two surreal moments—spending time maskless and close to friends instead of at a distance—left me feeling giddy and full of hope, even though I didn't get to embrace them.

Today, some of the small-leaf rhododendrons are beginning to show their pinkish-purple blossoms. Blush magnolia buds are opening and showering their sweet aroma on passersby like me. Daffodils are dotting gardens, roadsides and woodlands. After a long Maine winter that led into a spring which still looks too much like November, and after a fifteen-month pandemic isolation, the opening world is feeling surreal. I'll take it.

Should be looking like this soon.

blasts from the past in the not-too-distant future (fully vaxed!)

real celebrations. byobs. potlucks. barbecues. standing elbow to elbow. face to face. cheek to cheek. long and frequent embraces. diminishing situational diameters. gatherings longer than an hour and with more than four people. seeing maskless faces. indoor time with my peeps. eating in the screen porch. visiting with neighbors on the same side of the street. making new friends. getting help to take care of calvin. visions of sending him back to school. working in the garden without having to mind calvin. a house full of people. a house to myself. visiting friends' homes. sharing the sidewalk. sitting in close circles around the fire pit, dining table or wood stove. roaming the fields. biking or running the roads. maybe one day going to movies and restaurants. maybe bellying up to the bar with my chickies. sound sleep. deep dreams. carefree thoughts. easy breathing.

From eleven years ago, but you get the idea. photo by Timothy Diehl

readers write

The sentiments I've received from readers—some from years ago, others more recent—never cease to amaze and nourish me. I send my deepest gratitude to you, dear readers. You are in great part what keeps me afloat. Whether stranger, acquaintance or loved one, you have no idea how much I'd like to hear from you. You quench my thirst for connection in this long and lonely pandemic lockdown.

None of my marathon efforts will ever match yours. Unfathomable efforts by you for so long and with such love, strength and dedication. — Joanie

Wishing you all the best and for Calvin to be well. He is so sweet and he deserves a good and painless life. That is one of my wishes for him and of course you. — Caron

I’m writing an ineloquent email to say that your words touched me deeply and I am thinking of you and Michael and Calvin, and about how time passes and things change and don’t. — Pamela

Thanks for the courage to bare your soul. Such unvarnished truths. And through it all you find the specks of gold. Thank you for you. — David

The difference between the first journey before sunrise and the one you are on now, is that it was a shared experience to which we could all relate ... now we can only see through your eyes and feel from the depths of your heart and try to love you through it from a distance! Know that many of us are swimming along beside you each day, hoping to keep you afloat! XO — Betsy

You mention your body: I think of your spirit. Your soul. Your intrepid resilience and gutsy presence. You are love, and to sit with its awesome glow (undeclared by sincerely-modest you, yet clear to the reader) is a privilege and gift. — Peter

I feel a deep, almost painful love for you and for Calvin. My insides wring out every time I read your writing and experience your conviction and strength. I feel it. We all feel it. And with the strength of that compassion and the collective outcry of empathy, which pours out of your words, I truly believe you can move mountains. — Kaila-Ruth

Yesterday at the end of the movie when your phone rang and you sprang from a boulder like a Momma lion (to quote Joni Mitchell) I realized again how close disaster lives to you, that any phone call, or some little bit of unusual behavior from Calvin and the dangerous dark specter of epilepsy is right there looming over you. But you are fearless and I am full of hope that the right tincture is going to become available soon and it's going to help. xoxo — Lauren 

I don't have a special needs child, so I mean this in the very best way possible, but reading about your troubles makes me grateful for mine. Granted, I don't like my own troubles either, but yours put mine into perspective. Some days, I don't feel like it, but because of you, I take another deep breath, and continue to put one foot in front of the other. — Anonymous

If Calvin could somehow choose anyone in the world to be his mom, there is no one else on the face of this entire blue marble that would be a better nurse, a more conscientious caregiver, a more fierce and committed advocate, or simply a more profoundly loving and patient mom than the one he has tonight. And I honestly think he knows that. You should probably also know that doing what you do also helps some of the rest of us find something a little better inside ourselves. So thanks. — Jim

Wish I were there to bring up inappropriate topics at the dinner table and make you laugh ... for just a minute or two. Thinking of you here in SF. — John

Oh, dear. Time to stop lurking and 'fess up—I am listening too, from Zurich. I am the mom of three n/t (neurotypical) kids and here I am, fascinated, terrified, moved, by what you write. My kids see me reading and I explain to them why and what I am reading ... so we are all listening. — Danielle

Even though you may feel alone, you are not. I get it. I understand your words. I am here for you any time, any day. — Karen

I'm listening from far away and feeling. ciao — Federica

From Beyond Beautiful: One Thousand Love Letters, brainchild, curation and drawings by Peter Bruun, text by Christy Shake, photos by Michael Kolster.

covid vaccinations!

With help from Calvin's pediatrician and the nurses at our local vaccination clinic, Calvin, Michael and I were given three leftover doses of the Pfizer Covid-19 vaccine last Friday evening. As usual when receiving vaccines, Calvin was a star, and even (mostly) kept his surgical masks on. As rain fell on our faces when leaving the clinic, I felt a wave of relief come over me.

I posted the good news on Facebook and received an outpouring of support from over 350 friends and strangers—many who follow my blog—plus over 100 loving comments. There was only one unknown person who voiced his opinion, using expletives to dis so-called Pharma poisons, told me not to be a lab rat and then wished me good luck. He went on to say something to the effect that only sheeple choose to be vaccinated. I told him not to be a troll and added:

sheeple also drive on the right side of the street for a reason.

If not for the efforts of several compassionate health professionals, Calvin would not have gotten his vaccine until sometime in late April. Now, all three of us will achieve maximum immunity by the first of May and, as a result, will be able to get back to at least a few of life's pleasures like hugs, face-to-face encounters, and having small dinner parties with other vaccinated people. For this I am most grateful.

heartening

We had seen Calvin's seizure coming for several days. At five o'clock yesterday morning it finally arrived with a godawful, blood-curdling shriek. I half expected it to last a long time considering it had been seventeen days since his last grand mal, but it was the usual ninety seconds. Afterwards, so as to monitor his breathing, I got in bed with him. Though still little for his age, he's big enough to spoon. For an hour, I held my boy as he shivered and twitched in the wake of the fit. 

Thankfully, by late morning he seemed well enough to go for a car ride. I chose to drive the close-to-home loops in case his condition went south. At Simpson's Point, the bay was socked in by fog. Within minutes of our arrival, though, it began to lift. I took it as a good omen that things might be looking up.

Despite my son's chronic condition amid pandemic miseries, I've been heartened by other events of late: the ongoing efforts of some amazing people to get Calvin vaccinated sooner than later; vaccine appointments for me and Michael this coming Saturday; the promise of longer, warmer days for gardening and barbecuing; an offer by Calvin's already-vaccinated former aide to help take care of him in the coming weeks; a seeming decrease in Calvin's overall seizures; cardinals announcing themselves on the tops of trees; an unforeseen and out-of-context greeting with the Carhart three-dog walker smiling and bicycling past me and Smellie as we strolled down our street; a serendipitous and safely-distant yet close encounter with the runner as he rounded a sleepy backroad corner. With my window down and the heat on (an alternative version of underwater respite), he paused his workout and kindly asked how Calvin was doing (he has been reading the blog.) Calvin was in the backseat trying to eat his sock.

After my late-afternoon walk with Smellie, I sat on the front stoop for a spell to watch the world go by. I could hear Calvin stomping around inside the house with Michael; I was thankful to be off-duty for awhile. As cars and folks passed by, I found myself missing my old friend Woody. His porch—high, broad and covered—was so much better for people-watching than mine, plus it came with Woody. We'd sit there for the good part of an hour. Sometimes we'd say nothing at all. Mostly, we'd tease each other or talk about the mundane. Other times he'd listen to me grieve about my little Calvin, at times wiping my tears away. Once in a while, we'd grasp each other's hand from opposite sides of the Adirondack-style bench his son had built for him. He'd tell me that I was the best thing to happen to our street. I'd say the same thing about him. Sometimes his eyes got misty. He would have turned eighty-nine this July. It's heartening to think of him.

Sitting alone on my porch, I studied a slightly irksome, partially obstructed view of the street which I found strangely unfamiliar, considering it's my home. Feeling dissatisfied, I was about to retire indoors when I gazed upwards. There, in the clear blue, I saw the half moon, white as can be like an inverted cup in the sky. It was framed by thousands of little red buds fattening up on the branches of our maple tree. Yet again I felt heartened, this time by the unmistakable arrival of spring.

Simpson's Point

renewal

spring dang sprung. got a vaccine coming on. happening in a week. calvin is on the docket, probably sometime in april. so ready for a shot in the arm. 

fifty-eight outside. left my jacket in the house. hard to believe thursday morning felt like six degrees. i swear the grass is turning green. crocuses are pushing up. one bunch is already open. no boots on my feet. just sneakers. feeling almost giddy. 

ready for tiny bonfires. for outdoor gatherings, celebrations and visits. byobs. though it still looks like november, i can see the buds on trees and shrubs plumping. hear the songbirds going crazy. want to pack the backyard with all of my peeps.

tonight—just now—i took a short walk by myself (no dog, no kid) to deliver a hunk of cake to some friends who live around the corner. it was the first time I'd been alone since i can't remember when. i felt like my old self. i'm reminded that spring is time for renewal.